Image Credit ©Open Bionics
What’s in a label?
This question has been on my mind a lot recently. For one, I’ve been thinking for a long time that I might be Autistic. And since discussing it with my psychiatrist, who gaslighted me and retorted, “What does it matter? What will the label do for you?” I’ve been forced to really think about it.
In a way, I understand where he’s coming from — if I am indeed Autistic, it wouldn’t change anything, and I’d still have to accept myself and learn how to navigate the neurotypical world. But for me, the label is helpful because it’s a framework for understanding myself. It’s a framework to help people understand me. And if I’m going to try to navigate the world, I kind of need to know what I’m dealing with, no?
I say all this to ask, What’s in a label? Does it matter how we identify? For me, and for many others, the answer is a resounding “Hell yes!” For much of the disability community, words and language matter. How we define things, how we self-identify — it all matters.
But my recent conversation with 13-year-old influencer, Tilly Lockey, and Sarah, her mam (mother), was an opportunity to consider an entirely new perspective on the concept of how we identify as people with either neurological or physical differences.
Tilly rejects the “disabled” label. As a matter of fact, she hates it.
“If you break [the word] apart,” she explains, “it’s like [saying] you’re unable to do things, which I think is completely wrong.”
Tilly has been proving people wrong pretty much all her life. She was diagnosed with meningococcal septicaemia strain B when she was just 15 months old.
Her parents were told she had no chance of survival. But after an operation to have both her arms amputated, Tilly did survive, and Sarah made her a promise that she would get her arms back.
Not only did Sarah keep her promise, but as she sits back and thinks of where Tilly is today, she is amazed.
Fast forward 13 years, and Tilly isn’t just surviving — she’s thriving. She’s a bona fide model and beauty and style influencer. She vlogs makeup tutorials on her YouTube channel. She travels the world giving speeches and participating in panels—like the one she did last year with the Dalai Lama (no big deal). Through Instagram, Tilly gives her almost 40,000 followers a window into the magical world of bionics as an Open Bionics ambassador.
Changing the game
Open Bionics is a UK-based bionics startup that develops affordable, assistive devices that enhance the human body. Their maiden product, the Hero Arm, is the world’s first clinically approved 3D-printed bionic arm. It’s incredibly stylish and features a multi-grip functionality. That means its users (below-elbow amputee adults and children as young as eight) can grab things, pinch, give high-fives, fist bumps, and thumbs-up.
This is an extremely big deal. For Tilly and Sarah, this was — quite literally — a dream they didn’t expect to come true for at least another 10 to 15 years.
When it comes to prosthetics, Sarah explains, “There wasn’t an awful lot that would help children. People would always say, ‘Oh yes, she’ll be able to have this when she’s older.’ But, I asked, ‘What about now?’ Surely there’s got to be something available for kids. And there just wasn’t.”
Sarah goes on to explain that, especially when it came to prosthetic hands, no one was interested in creating solutions for children because they grow so quickly, and the costs are high — £32,464 (US$41,979) to be exact.
“Their argument was [that] everything was going to cost too much money and that the market wasn’t big enough to really tackle that problem,” Sarah says, “Which is awful, really.”
Which is why Open Bionics is a game changer. According to the company, current upper-limb prostheses already exist as hooks, grippers or expensive bionic hands. So, they’re on a mission to make bionic limbs accessible for adults and children. They are able to keep the costs down by using 3D printing technology. They’re also on a mission to make them cool, fashionable, and fun for kids so they would want to wear them out and about.
Tilly Lockey – Born to stand out
“I like to think of my hands as a really awesome accessory,” Tilly says. “I like to match it with my outfit or how I’m feeling. It’s kind of like a handbag that you can just pick up and add to your outfit.”
Which is a far more empowering experience than wearing the more “realistic” prostheses — the ones that try to mimic the look of human skin and flesh. Tilly describes them as “really realistic, to the point where it was quite creepy how realistic they were.”
Even though they were supposed to look real, Tilly says, they weren’t helpful because they didn’t move in a real way. She hated wearing them and she hated the stares she would get from people.
What she hated more than anything was that they are designed to blend in.
“It was almost like you would wear them so other people didn’t feel insecure or uncomfortable around you,” she says. “It almost seemed like you were supposed to be ashamed to be different, and you had to look like everyone else.”
But Tilly isn’t here to blend in. She’s here to show off her limb difference, which is why she loves the Hero Arm. She still gets tons of stares, but with the Hero Arm, they are stares of awe and admiration. Instead of being creeped out, people want to shake her hand and they are excited by it.
“It’s almost like you are wearing what they see in all the Marvel films. It’s so much fun.”
The future is bionic
In fact, Tilly’s very first project with Open Bionics was at Comic-Con, where she sported a custom hand inspired by the Deus Ex video game.
And then, in January of 2019, Open Bionics teamed up with 20th Century Fox to build custom Hero Arms for Tilly, inspired by Alita: Battle Angel — a futuristic action film where cyborgs are given bionic limbs. They surprised Tilly with a new pair of Hero Arms before the movie world premiere in London, where she hit the Blue Carpet alongside the movie’s star, Rosa Salazar, producer Jon Landau, and director James Cameron (who directed both Titanic and Avatar). Again, no big deal — just a typical day as Tilly Lockey, bionic boss babe.
Together with the team at Open Bionics, Tilly Lockey is ushering in the chic and fashionable bionic age. Her vision for the future is very clear: she sees bionic hands-on fashion runways and Vogue magazine cover shoots. Her role as an ambassador includes user testing, which means she gets to try out new products and let the team know what works and what doesn’t.
Her goal is to keep working with the team to make the best bionic hands possible, “to the point where they’re better than human hands,” she says. Tilly dreams of a day when anyone would wear bionic hands simply because they wanted to — whether they have a limb difference or not. I could see it happening because she makes them look so damn cool!
And this is why, for Tilly, the “disabled” label just doesn’t cut it. She sees her limb difference — like all other physical differences — as a superpower.
“Somebody who’s blind, their superpower could be the fact that they have a heightened sense of hearing and touch,” she explains, “Whereas people that can see might not feel like they have those same heightened senses as a blind person. So, I just think that everyone is just so unique in their own way and that should be really embraced. There’s no reason to have a name for it.”
For Tilly, we’re all just humans whose bodies have differences. If she had it her way, we wouldn’t have any labels at all.
“Everyone’s a person at the end of the day. Whether they’ve got hands or no hands. Or whether they’ve lost a leg, or whether it’s deafness or blindness. At the end of the day, everyone’s just the same.”
“Everyone’s the same, but different. If you know what I mean,” Sarah adds.
Yeah, we know what you mean.
Maybe my psychiatrist is right and I don’t need a label. Maybe I should just think of my neurodiversity as a superpower.
This article was originally published on Uncomfortable Revolution